Sunday, January 26, 2014

In an editorial entitled “DNA Standards” in the
December 2013 issue of the National
Genealogical Society Quarterly Melinde Lutz Byrne and Thomas W. Jones
lament:

When genealogists began to apply DNA test results to family
history, they had the opportunity and responsibility to set standards—not for
laboratory procedures, but for acceptable linkages to individual documentation,
ethics, and interpretations. It was an opportunity missed. Had they been
established, such standards would have set boundaries to embrace the power of
genetic testing and, the same time, to avoid abuse. As difficult as it is to
cite, describe, explain, or utilize this rapidly evolving tool, the real
DNA-test quagmire is ethical.

Byrne and Jones raise important questions:

With no established standards, editors face a conundrum when
considering articles from DNA-test participants. Do they publish results that
might affect relatives who have not released rights? When a DNA profile becomes
as easily recognizable as a cursive signature, who has what rights?

However their implication that genealogists, by being more proactive, could have influenced the practice of DNA identification in the criminal justice system seems far fetched.

The editors acknowledge that "widespread understanding of the capabilities and limitations
of DNA testing lags behind technological advances." This pattern has been repeated over and over again with all technologies probably going back to the appropriate use of clubs in the age of the cave clans. Was it OK to use it on game? Was it OK to use it for self defense? To control others?

In more recent times the Internet developed far faster than our abilities to anticipate and understand how it should be used. In the last quarter century, no areas of science and technology have expanded faster than the Internet with the possible exceptions of astronomy and genetics. It is not in our ability or interest to try to stop these developments while we figure it all out. None of us have the ability to anticipate all the possible implications of developments in these fields. If we were that clairvoyant, we would be frozen into inaction by all the possibilities. But I suppose that inaction has occurred anyway.

Ethical behavior in the application of genetics to family history research and to health related endeavors is no simple undertaking. It involves balancing the:

right to know;

right to privacy;

right to own and benefit from intellectual property; and

right to protect our communities.

Should NGS have a role is discussing and providing guidance in appropriate practice? Should ISOGG? You bet!

3 comments:

Thank you for highlighting what sounds like a very interesting article. I hope the NGS will eventually make it available as open access. The interpretation of test results is changing all the time because we are all learning as we go along. For example, now that more Y-SNP testing is done we now know that some 37-marker matches are not matches at all and are in different subclades. It would be very difficult to set standards while the science is still developing.

The authors have raised some important points about the ethical issues involved and I think this is something that few people seem to consider. As you say, it is a difficult balancing act, but we should all bear in mind that a DNA test result can affect not just ourselves but other people too.

We do now have a page in the ISOGG Wiki devoted to resources on ethics:

http://www.isogg.org/wiki/Ethics

I'm sure that there is a lot more that we can do. I would not like to see a US-only organisation setting standards. I would much rather see ISOGG taking the lead and setting standards that apply internationally though in theory the ethical issues should be equally applicable in all countries.